It’s the end of a looooong summer for all of us. We are celebrating the end of Byron’s surgical journey. All of the things Byron loves are on the docket; soup dumplings, Broadway with Dear Evan Hanson, time with Uncle Jeff and Alessia, watching his brother Ryan complete a 10k in Central Park, The Stranger Things experience and more…
The great news is that Byron’s fevers seem to be gone! Now the real healing can begin. He’s pretty tired but in most ways he’s back to himself.
Maybe, just maybe we are rounding the bend with the fevers. Down to 100 with no Tylenol. Byron is much more like his old self. Energetic, loud 😂 funny. All in all a good day.
It’s very strange how Byron is still experiencing fevers almost all day ranging from 100-101.9. We are really hoping they abate soon. But he’s generally feeling much better.
Taken this evening
Today Bob took Byron to NYC to get the 60+ staples removed and to meet with Byron's epilepsy specialist. The removal went well with no pain (PHEW) and we have a slow weaning plan to get Byron off of the seizure medicine. I think the weaning schedule is too slow but I always do. He is on such a huge dose that I really want him to be finished. And, if the surgery was a success and there are no more seizures, we will know it once the medicines are removed.
The only minor hiccup is that he is still having fevers. The surgeon did not seem too worried about it. He said that they should level off soon. Hopefully the antibiotics will help.
Byrons attitude remains excellent. He has never complained except during the first few days. He takes this challenge in stride like most things. Truly a remarkable human being. Even being his mom, I'm not shy saying that :)
Sent the following letter off to the school today from the doctor.
Today Byron visited his pediatrician to see if we could uncover any reason for the fevers. Bloods were drawn and we just received the results. The blood tests look excellent. He has a slightly elevated white blood count (14.5 for those who know this stuff). This is actually really good. Ten days after his first surgery his WBC was 28. He also looks like he might have a very slight bacterial infection. So as a precaution she is prescribing an antibiotic. We agree with that recommendation. Other than that, his energy and alertness seem to improve every day. Thursday to the city to see the surgeon to have all 68(!) staples removed.
For the first time in many days Byron’s fever broke and returned to normal. His behavior changed quite significantly. He seemed more like his old perky, friendly self. He even wanted to play video games 😳😄(there needs to be a mixed emotions emoji). This was on Tylenol but in previous days the Tylenol only brought it to 100-101. Now the goal will be to keep it this way!
Fevers of 101 ish up to 102 all day. Tonight he said he felt “vulnerable.” It’s a good thing to acknowledge feelings like that as a 15 year old yet I feel him. What an ordeal to go through, not once but twice. I wish things could be different for him, but as a doctor once told me “you must play the hand you are dealt.” And he does. And we do.
Fevers went up to 102.2 today but came down with Tylenol so we are still ok.
Healing is a *#%!
No crazy trip to the NYC Emergency Room is in our plans for today, thank God! Byron's fevers are down significantly and his eyes are brighter. Praying for this to be our future.
UPDATE: Heard from the surgical team. Watch how he is overnight. If things stay the same or improve there is nothing to worry about and he is indeed getting better. If the fever gets up to 102.5 or 103 and he is lethargic, nauseous or vomiting then drive to the ER in NYC.
Fevers are too high, now at 102. Have a call into the neuro at Columbia. It's tricky because you don't know who you will get. Hopefully a smart, savvy genius who will tell us what's what.
This was the sky the night we got home. Beauty and fire.
Despite all the great news there are still things that make me worried. Byron had a high fever last night, 101.8 and a lower fever this morning. 99.7. Still having neck pain on the right side, light sensitive and pain behind the eyes and scarring area. If anything shifts and gets worse I will call the on call neurologist.
Byron is doing so well. No fevers. He had some pretty intense neck pain this morning so we took him to have a massage and that really helped. Tomorrow he gets some physical therapy and acupuncture. He is spending alot of time in bed resting but his appetite is good and his systems seem to be coming back online.
Byron is home and doing ok. Fever of 101 but we won’t worry about that just now. Celebrating having everyone under one roof.
As far as all the morning nurses can tell, we are going home sometime this afternoon. We need to wait until the morning rounds. His swelling looks good and fever is only 99. Not too bad.
A member of the neurosurgery team came by and said that they were not all that worried about the swelling next to the right cheek, but more abut the swelling on the top of the head. They said they would check it overnight tonight and again in the morning. Furthermore, they said that we are still working towards leaving tomorrow. Byron was elated by this news!
This photo shows the swelling on the cheek area.
Byron’s fever has gone up again to over 100 and some new swelling has appeared on his temple. The doctors are convening now to see what’s next.
Byron continues to improve so going home sounds like it will be today or for sure tomorrow. I was struck by how comforting this little bear has been for Byron. He was here for the first surgery as well as many medical procedures. His name is Kevin. ❤️
Byron finally ate some good solid food. A bit of chicken and rice and a yogurt drink. They really put him through his paces today. Not only did he walk in the hallway but he went up and down a flight of stairs!
Fever of 101 but that does not seem to be a concern at this point.
Byron tried to have a blueberry muffin this morning but it didn't stay down. The goal for today is to get as many calories in him as we can. He hasn't really eaten in two days and he is already so skinny! We bought a couple of high calorie drinks like Naked Juice and Yogurt Drinks from the hospital store so we will keep trying.
Other than that he is alert and talking but mostly resting with his eyes closed. He tried to look at his phone but it was too much.
His blood pressure is still too high but other vitals are good.
Byron has been moved to the step down unit. This is a "step down" from ICU and boy is it nice! It's completely quiet with private rooms, private bathrooms, elegant conference space - like a nice hotel! Byron's physical reaction to this surgery is a bit different than the first. The first was very linear: pain was there but got better over time and each day he made more progress. This time, he makes big strides and then takes a few steps backwards. He is in a lot of pain right now, doesn't want to eat and is requesting WAY more morphine than the first time. But hopefully he will have a great nights sleep and be back at it tomorrow. Good night!
Byron is more alert and clear this morning with his speech. The nurses were in every hour all night (and had to wake him each time) so he’s pretty tired. Yet he even cracked a smile. He’s sleeping now. All in all a good beginning for the day after.
This surgery was WAY longer and more complicated than the hemispherectomy itself. And we can see that in Byron's recovery. He is vomiting profusely and there is much more blood. (sorry - yecch alert) None of these things were present in the first surgery. But it is so very comforting to be at a world class hospital. Every nurse, doctor, nurse practitioner, anesthesiology we meet are at the top of their game. And super nice!
We will be in the ICU this evening and next and then two more nights in the "Step Down" unit. I am looking forward to greeting Byron when is awake and lucid. Right now he is asleep, but the doctors who examined him said that he is exactly where he should be and all looks really good.
I won't post any pictures until Byron says ok. He's not camera ready right now :)
We haven’t seen him yet as they are preparing to move him to the intensive care unit. The surgeon told us that they never found any missed connections so how the seizures were crossing over the corpus collosum remains a mystery. They ended up taking out the frontal lobe and most of the parietal lobe from the disconnected side. When connected directly to an EEG, these parts were seizing mildly. There was some significant blood loss which took some time to control, but no transfusion was necessary. Head was not shaved.
Pic for reference
P.s I put these technical details here mostly for future reference when future doctors ask probing questions and I will have totally forgotten the details . 😅
The surgeon did say he wants to take his time so he can get really clear why this happened. He said that if Byron’s situation can help another child, then it’s worth finding out how the seizures were getting across. That’s the benefit of being in a teaching hospital.
This is taking much longer than the first surgery. I know when we see the surgeon it will all be explained.
Great news! We heard from Dr. Feldstein that the surgery is on for Wednesday. They are not going to do the SEEG. They are going directly in and will monitor the brain once inside. The plan is to remove the right frontal lobe (already disconnected so this will have no impact on Byron's movement etc.). This is the part of the brain that they have determined is still seizing and is somehow reaching the left side.
Bryon and Bob will arrive early Wednesday morning for surgery at 8:00 am. The surgery should be complete by noonish on Wednesday. Then a hospital stay for 3-4 days and then home.
Bob and I just reviewed the videos of the first surgery from the hemispherectomy from November 2017. The surgery will require the same incision and craniotomy so the pain and swelling will likely be the same as the first surgery. This will mean a bit of careful wound and pain management. The last time he went directly to long term rehab at Blythesdale so the nurses there took care of all of that. It will be interesting to see how this unfolds with all that happening at home. I truly hope this is the LAST time this poor child has to go through this.
The surgeon had emergency surgery today so the conference to present Byron’s case was postponed until Monday. Still holding out for Wednesday as a possible surgery date but seems unlikely. Trying to keep Byron healthy and away from any Covid exposure so a quiet weekend for us 😷
All of our meetings with Byron's doctors were pushed up to early this week (this morning via Telehealth and yesterday in NYC) so his case could be presented in an epilepsy conference this Friday. In this conference the doctors will come up with the best course of action. Byrons' surgeon will call us with the results of the conference Friday afternoon. They are still keeping next Wednesday, July 27 as a possible surgery date, whatever type of surgery that may be.
Byron LOVED his week with Ryan and Regina and niece Charlotte. He especially loved The Weekend concert in East Rutherford. Byron went with a young man he met in Coding Camp.
Byron helping Charlotte down the stairs.
Today Dr. Feldstein’s office called and we have a telahealth appointment next week on the 21st at 3:45 pm. When I asked what this call was about the secretary didn’t know. She put me on hold and found out from the nurse that it was to discuss surgery. So there is movement!
Byron reports that coding camp is going well. It is being taught by very bright 18 and 19 year olds. Byron was put in the advanced group. All that prep Byron did with his Dad learning Python together has paid off. Byron seems very proud of himself.
We had a lovely weekend with my brother and his girlfriend Alessia.
As the summer unfolds it is a time of waiting. No-one has gotten back to us about next steps so we just have to be patient. (I have tried calling of course) Byron is tolerating the medications remarkably well and seems to be just fine. He starts a Python Coding Camp in Montclair New Jersey next week. He will be staying with his brother Ryan and Regina and our granddaughter Charlotte in their lovely new home in Upper Montclair.
Byron's next big summer event was to be a two week overnight camp called Frost Valley. I called today and let them know that he might not be attending. We are hoping that there will be movement by then and this can all be behind us.
Byron is so happy to be home. He had a very restful and long night sleep. He’s had great snuggles with Max. His friend is coming over this afternoon for a relaxing visit with barbecue from the local smoke house.
He also saw an Osteopath this morning who lives here locally. She is truly gifted and I believe she helps him tremendously.
And it’s a gorgeous, sunny, mild day A nice pause between now and all that comes next.
We have a way forward! Just had an excellent meeting with Dr. Feldstein (I LOVE FaceTime) the wonderful neurosurgeon who did Byron's initial surgery. There is so much hope now! He doesn't know yet why or from where the seizures are happening but he is determined to make them stop. And soon! There are several pathways forward:
1) The DTI specific MRI that we had yesterday might show a missed connection. This missed connection can be fixed by a laser ablation procedure. Not even an overnight in the hospital!
2) The DTI doesn't show anything so they proceed to an SEEG. This is tiny implants through holes in the cranium, minimally invasive, and these readings will tell the surgeon exactly where the seizures are coming from. Once they know (usually takes 1 - 4 days in the hospital) on the same hospital stay, they can go in and remove this seizing tissue. Should be minor pain and not a long hospital stay.
The best news is that the surgeon said "I'm not going anywhere this summer so I want to get this done!"
Hallelujah! All the prayers and blessings from all over the world and from so many dear friends and family have supported us while we get the answers that we needed. Grace abounds.
We do not have complete seizure control and a definitive plan to move forward but there is not much more we can do here. So we follow up in two weeks with his neurologist, hope the neurosurgery team has ideas, and we wait. But Byron seems alert and not too overly compromised by the very strong medications so that’s great. We thought he might be pretty out if it. But other than being a bit sleepy he’s alert and steady on his feet.
He’s very very happy to be getting home to his video games, his dog Max and the rest of his summer. So are we. But we leave with a nervous undercurrent. I want those five years seizure free to continue for the rest of his life. I want another permanent solution. May it come and come quickly. A lifetime of seizure meds is not our best option. Onwards!
Today Byron was disconnected from the EEG leads to see an opthomologist in another building. In order to get there he had to travel in underground corridors more scary than any movie he said he's seen! He’s had three seizure episodes this morning already so we really hope they rehook him up to the leads. In a few minutes he goes up for another MRI. In the meantime they have a new room. With a window. Much nicer!
Even with all the new medications the seizures are not under control. But the hospital is very quiet tonight so even though the EEG machine is making crazy lines showing that his brain is having a non stop electrical party, Byron remains asleep and at rest. You can really see a lot on FaceTime. Kudos to whoever invented this!
The brain/ body is strange and wonderful. Hopefully we will have more news tomorrow. We were told today that we may be here a few more days. I agree. I don’t want them to release him until we have a real plan.
The first medication they put him on was Keppra and at least this seemed to stop or slow the clinical manifestation of the seizure, meaning the eyes locked to the left. So that eye movement is not happening now which is good. But the subclinical, the electrical discharges in the brain, have not abated. This is very worrying. The doctor called them "cyclical seizures", originating from the frontal lobe on the disconnected side.
So they are going to add another medication Vimpat. He will be on Kepra 1000mg twice per day and Vimpat 100 mg. The surgical team is going to meet and consult, but not until tomorrow. We will have some idea of what the surgeons say about next steps then.
Bob is tired but he's resigned to the fact that they will spend at least one more night in the hospital. The medicines are affecting Byron now, he's very sleepy and kind of out of it. This is why I REALLY dislike seizure medicines. There is no way around the side effects. More soon...
Sorry in advance, this entry is LONG.
It’s been a banner year for Byron. He graduated 9th grade from CCHS, a collegiate private prep school with top marks as well as college credits in Writing and Spanish. YAY!!!
The next day after school ended, he started to complain of headaches upon waking. They were severe enough that he needed to take Advil and stay in his room until they dissipated. Then he started to complain of something he called “fatigue”. He said he was having fatigue and that it was severe. But when pressed he said the fatigue was short and came and went. This was suspicious but we weren’t sure really what he was talking about. The headaches became so severe that Bob and Byron went to the ER at Morgan Stanley Children’s in NYC on Saturday June 18, to have them checked out. The on-call doctor was worried about hydrocephalus. This is an increased pressure in the side of the brain with the hemispherectomy surgery (right) caused by buildup of fluids. This can actually be fatal if left untreated. After 7 hours in the ER and an MRI with DTI contrast - using this technical terms for my records - they found no evidence of Hydro so they let them go.
Headaches continued. “Fatigue” continued. On Monday June 20, Bob was teaching Byron to drive at the college. I was in the backseat. Bob said, “Make the turn here into the parking lot”. Byron said, “I can’t I’m having fatigue”. I explained that you don’t usually just have sudden fatigue and asked him what else is happening? And that’s when he turned to the back seat and I saw it. Both of his eyes were locked to the left. He was conscious but he was having the classic focal (partial) seizures that he has been having on and off since he was a baby. These are not the seizures that precipitated the hemispherectomy. That was ESES (electrical status epilepticus in sleep), an extremely rare form that exhibits as constant subclinical seizures. ESES was causing him to regress developmentally.
After getting a few more of these episodes on video (they were happening every fifteen minutes), Monday evening I called the Columbia doctors answering service. I spoke to a lovely neurologist who told us that we need to come back to the ER. There was no rush but to arrive to the ER Tuesday morning, June 21.
So off Bob and Byron went again (so glad Bob is retired) and I stayed home to hold down the home and work fronts.
My position is permanently remote so it is perfect! There is so much good fortune and Grace in everything that happens in our lives, in all these situations. Even through the outer circumstances seem difficult, everything aligns to make dealing with them very easy. For example we don’t have to worry about insurance. Everything is fully covered because of Byron’s Medicaid (we never see a bill). This is not so for many children. Our son and daughter-in-law Ryan and Regina, now live very close to the city with a direct train, so the car could be left with them and the trip could be made without driving and parking in NYC. Bob is retired so he can fully take this on. It’s all good!
They finally admitted Byron. It took them nearly eight hours to get a room from the ER but Bob and Byron remained in good spirits. When I called they were watching “Jaws” without sound.
When they finally got Byron hooked up to the EEG at around 5pm they noticed he was having what they called “Cluster Seizures” seizures that happen one right after the other. AT 6 they gave him 1000mg of Keppra via IV, and then at 10:45 pm they gave him Ativan 2mg via IV. Byron slept well. Bob did not. There was a child who was having a hard time overnight so there was constant sound. They made funny clown noises at the front desk to sooth the child (Children’s hospitals are amazing) but Bob was kept awake by the crying and the clown sounds. I should say that they are not on the epilepsy floor - not sure why. The epilepsy floor is pin-drop quiet. I do hope Bob asks about moving.
In the middle of the evening last night I emailed Byron’s surgeon to let him know what was going on. I got a short email this morning that he would try to stop by the room. This morning, I was able to be on speaker phone in with the doctor on call (not a neurologist). Apparently, all the seizures are arising from the disconnected right side. She was not a nuero so she couldn’t give us any more detail. Hesitantly I say, this is good news.
There are three things I see coming and questions we will ask when the Neuros come around about 11.
1) If these are all coming from the right side, was there a missed connection that you couldn’t see on the MRI? Sometimes even if there is tiny bit of tissue left connecting the right to the left, this makes a successful bridge for the seizing side to affect the “good” side.
2) If you determine this is the case, is another surgery on the table?
3) Is an “anatomical” hemispherectomy an option? I have communicated with several Mom’s of kids who had to have the entire disconnected brain removed from the skull cavity as it just couldn’t be trusted in there to stay. This has stopped all seizures. Byron’s was a “functional” hemispherectomy where the brain is left attached to the blood supply. There are more risks to this procedure however, including higher risks of hydrocephalus.
4) If we try medicines, what are the side effects of being on multiple seizure medicines for something that can be remediated surgically. Byron failed three medicines, Keppra, Trileptal and Onfi, before his surgery (failure means they don’t work as expected or cause terrible regression or behavior problems). Frankly we are not that eager to go down the “try and see” with multiple strong medicines. But let’s see.
To be continued…
On Thursday May 5 at Maria Fareri Children’s Hospital in Westchester, Byron underwent a Green Tendon Transfer, elbow release and some additional hand and wrist surgery on his left arm. For the first time, among all the various surgeries and procedures he has had, this surgery was Byron’s choice.
Last month Byron saw Dr. DelBello to discuss his scoliosis. Byron’s pediatrician wanted Byron to be looked at because almost all children with Hemiplegia have some sort of scoliosis. The doctor was not at all worried about the scoliosis but remarked that he could do some surgery on Byron’s left arm to make the placement more natural and the hand more relaxed. Dr. DelBello said it would be largely cosmetic, but it might give Byron a bit more functionality in that hand. Byron was immediately eager to have the surgery if it could be completed before summer. With Byron’s great luck, we were able to secure a date where the cast would be off before mid-June. After the cast is removed Byron will need 12-20 weeks of therapy twice a week to ensure that the new placement remains and to tease out some more functionality.
The surgery was a success! The surgery was late afternoon. All told we were at the hospital just under 6 hours including recovery time. The anesthesiologist gave Byron a nerve blocker before he woke him up, so his arm was numb until about 4 am the next morning. Then the pain really kicked in. He was on Motrin, Tylenol and opioids for the first day. Today we will no longer give him the opioid. He seems to be doing fine. It’s pretty uncomfortable but Byron thinks it was still worth it. Before and after pictures will follow.
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| Waiting for the Surgery |
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| The Beautiful Hospital - Very clean! |
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| After the surgery, waiting for him to wake up. He woke with a start and was VERY grouchy! |
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| Home an happy with a very late dinner of Taco Bell. |
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| The next day - brave and smiley as ever! |
Sweet Byron, who has lately been a very healthy guy, will be having a heart procedure called an ablation on Tuesday August 24. In February of this year (2021) he developed tachycardia, a condition where his heartbeat would reach about 245 beats per minute and last up to an hour. This has happened a few times since then.
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| After our first 5K Run |
